KINDERGARTEN GRADUATION, PART 2

Tonight it was time for Jacob's kindergarten graduation at Coyote Ridge. I was scared the first time I put foot in this school. I couldn't imagine my little boy in this large elementary school. This is where having an open mind is a good thing. This place that once scared me has been Jacob's school for the last year, and we are today confident that we have found Jacob's school for years to come. We have gotten to love Jacob's kindergarten teacher Mrs. Pries. She is simply one of a kind. In Jacob's special ed teacher Chandra we have found a teacher who truly understands (and loves) Jacob and his needs. Jacob's therapists Mrs. Peggy and Mrs. Katie have truly grown on us!

We were greeted by the school's Principal. She has been a big supporter of doing the right thing for Jacob from the beginning, even before Jacob started at Coyote Ridge. We definitely count her as being part of Team Jacob.

We started out in the classroom. It was loud, but several of the kids wanted to take their graduation pictures with Jacob. Jacob also got everyone in the class to sign his graduation bear he received from Gemma today.

It was then time for the kindergarten performance. All parents were told to go into the gym and sit down and wait for their kids. It was such an odd feeling to leave Jacob behind in the classroom as Gemma, Joakim and I went to sit down in the gym. Jacob was in the hands of Mrs. Pries and Sarah!

It was a good odd feeling to sit down with all other parents and see my child getting up on stage with all the other kindergarteners. No nurse or parent next to him. Mrs. Pries had told Sarah that she wanted Jacob in the front, so everyone could see how important he is. That melted my heart. As parents were filming and taking photos of their children singing song after song, I was so very proud of my boy. I could see him shaking his head a little, which Jacob does when he is happy and content. He enjoyed all the singing, and being in the center of attention!

After the graduation ceremony, it was time for cookies and more pictures!

 

We can't wait to be back for 1st grade, but first it is time for summer school! We are so excited that we get to keep Mrs. Pries in Jacob's life over the summer as well!

And here are to two goofy kids!

 

 

 

Next week, it is time for Sarah's continuation...I can't believe that our girl is soon to be done with elementary school, ready to move on to Middle school in the fall. The kids are growing up...

 

Love, Maria.

 

 

 



KINDERGARTEN GRADUATION, PART 1

It's me. Mom says it is better I update about today's celebration. She is still emotional. There was a time when mom never thought that I would make it to kindergarten..and here I am, graduating from Bal Swan today! Mom,dad and sis were all so proud of me!

 

 

This was definitely a bit of a rocky year for me. Seizures and colitis made me miss school a lot in the fall. I also was homeschooled for the first time in my life this winter, but I sure ended the school year on a positive note. I have loved being back in school this past month.

Bal Swan has been my school for the last 5 (!) years. I started at Bal Swan when I was two years old. My mom knew there was something special with my school the first time she took me on a tour of the building. She had no intention to have me start at school when I was two, but the school simply blew her away, and I started slow with two mornings a week. School has always been my happy place in life. It has been the place where I have made friends. It has been the place where everyone knows me, and cheers me on. It has been the place where I have proven my loved ones that I can always do more. It has been the place where Mrs. Jill, Mrs. Melissa, and Mrs. Laura have helped me with all my therapies for years. The warm water pool is one of the best places to hang out any day of the week! Bal Swan became my extended family. As my mom was driving us home, she summarized it pretty well. Bal Swan has set the bar for what a school setting should look like for me, and we will never settle for anything less! Bal Swan will always have a special place in my heart. This is not goodbye.

We had to perform for our parents today. Sis was helping me out a little bit, since I needed my communication button for my part.

Here I am with Mrs. Jill. We have had a blast in the pool for the longest time ever! I will miss her to the moon and back.

Here are my most awesome teachers Mrs. Margo and Mrs. Cristy. I will miss them to the moon and back! Can you see that I am starting to be tired?

After the kindergarten graduation, Selina and family came home with me to continue the celebration. We had ice cream to celebrate, and later on pizza dinner! Did I tell you that I also got my first red rose today? Sis bought me the most beautiful rose for her own money.

After 7 (!) hours of celebration, I was tired! What better place to end the day than me in my dad's comforting lap?

 

Tuesday, it is time for kindergarten graduation, part 2. I am then doing it all over again at Coyote Ridge!

 

Love,

Jacob.

KIDS NEED KIDS

At the same time as I am starting to set up Sarah's summer activities and camps, Jacob went back to school this week! He will be going to school from May thru end of October is the plan. Right now he is finishing up his kindergarten year at Bal Swan and Coyote Ridge.

Where do I start? I'll start at the end. Jacob hasn't been this happy in months. He simply couldn't stop smiling. Kids need kids, and Jacob needs his buddies! Isn't this photo priceless?!

And this looks familiar to me, the girls hanging out with our boy...

 

and his friends reading to him.

Jacob is always up for dress up :-

And once again our boy surprises us. He was asked which dice had the highest number, and he picked the right one every time!

 

 

Here Jacob is with his teacher Chandra!

 

 

It is so much fun to push the button, so the crocodile bites the kids' fingers!

 

 

What a cute couple!

 

 

And once again, coach Mo made nurse Gemma cry. Coach Mo had planned hockey for Jacob's class, but he wanted to give the class two choices today. They could either play hockey as planned or since they had their special friend Jacob back in class, they could watch a short movie on how they could help Jacob in PE. A few boys voted for hockey, but the big majority of the class wanted to watch the movie to help Jacob. The movie was about two siblings. One of the siblings had Cerebral Palsy. He was always left behind. His brother decided to help him do a full triathlon. He was running with his brother in his wheel chair, he was swimming with his brother on a floatie, and he was biking with his brother in a bike trailer. It was a moving story.

 

 

 

It was then time to run! All the kids explained to Jacob when the music is really fast they have to run as fast as they can, when the music is slow they have to walk. The kids were next to Jacob's wheel chair cheering him on throughout the gym, making sure he listened to the music and adjusted the speed of the wheel chair. When it was time for pushups, Jacob told Gemma she had to do them for him! After all, she has signed up for a 157 miles bike ride called Courage Classic this summer, so she needs to get in shape too. Once again, Jacob was completely included in his PE class!

 

It is Friday night. I am tired from the busyness of this week, but I am smiling. I am smiling because I know our Jacob is so very happy.

 

Love, Maria.

 

 





I LOVE YOU

I remember clearly the first word Sarah told me. We were in a small hotel room in Gothenburg, Sweden. I was attending a conference, and Sarah was hanging out with grandpa Sven during the day. In the evening, she pointed with her tiny finger towards the ceiling and said "LAMPA". That means lamp in Swedish. I don't think it would have matter what word she would have said, I was just so excited that my baby girl was talking!

Throughout the years, people have asked us if we know what Jacob thinks and feels. I have always felt that we have been able to know how Jacob is doing and feeling, but it is broad feelings rather than specific details. We have always tried to have him make choices with his eye gaze and with flash cards. We have also throughout the years been using Big Mack buttons where we have been able to record specific sentences or yes and no.

This year, Jacob got to try his first real talker. I have not seen Jacob so excited in a very long time! One of the trickiest part was to find a switch button that Jacob could operate independently without us supporting him. It took a lot of trial and error, but I think we have now found the perfect switch. He activates his talker with his thumb!

On Friday, Jacob got to loan a new talker from his school district. His speech therapist and the assistive technology specialist from the school district set up his talker with many more choices than we had on the previous talker. We were told to have Jacob explore his talker as much as we can, and off went our boy!

The first time Jacob told me "MOMMY I LOVE YOU" on the talker brought me back to that hotel room in Gothenburg. Despite the technology voice telling me the word back to me, I knew that Jacob had picked the words he wanted to communicate. But before he told me he loved me, he actually told me that I work too much! "MOMMY WORK ALL DONE". I had just told him I had to go and chart for the day, and Sarah called me from the kitchen that Jacob just wanted to tell me something. Jacob has told us all that he loves us. He has told Gemma that she belongs to him. When Jacob picks to play, he almost always picks the IPad.

We're all like children in our house right now, all eager to find out what Jacob wants to tell us next!

To be continued...

Love,
Maria.

A BALANCING ACT

Many special needs parents have to quit their jobs in order to care for their child and attend to doctor's and therapy appointments. I consider myself very lucky to have an understanding employer who has sticked with me through long hospital stays, endless doctor's appointments, sudden ambulance trips to the emergency room, and the list goes on and on.

My employer puts on a company meeting about once a year when all of us get together to reconnect, revisit goals and vision, and have a lot of fun together. This was my 9th company meeting. That is the time of the year when I go back to a full-time work schedule, and leave Jacob in the care of Joakim and his nurses.

But...it doesn't really work that way. When Jacob doesn't feel well, he never just feels a little bit under the weather, it is always pretty bad and can quickly get worse.

So as I was in the middle of giving a 4-hours training on management leadership to our management team, I could see a text message popping up on my phone: Fyi, Jacob seized earlier and we medicated. Medicated? We haven't treated a seizure for 5 months, so I knew it meant trouble. I went on talking about coaching, motivation, and the importance of communication. Once in a while, my eye landed on the phone, but no more text messages were popping up. I saw that as a good sign. It meant that Jacob was most likely still at home.

As the training was completed, I had an afternoon of back-to-back meetings. I asked for a quick bathroom break, and called Joakim at the same time. I found out that Jacob had gotten into status epilepticus. He had had a 70 (!) minutes long myoclonic seizure. Yikes! As I was in my next meeting, I got the video with Jacob's seizure in my inbox. I quickly viewed it as we were planning a team building activity. I also was able to quickly get a text message to Dr. C. telling her about Jacob's seizure, and that we needed to talk.

Later in the afternoon as we were going through the team building activity, I had to excuse myself as I saw a call coming in from Children's Hospital. Dr. C. wanted to discuss the seizure and a plan of action.

The next day, there was no going in to work. I had to pack up the car for a day at Children's. The day of the seizure, Jacob had his scheduled labs, and it was clear that he had an infection brewing. Dr. C. wanted to have a full workup of Jacob to find the source of infection. It didn't take long. Jacob had an ear infection on his left ear. Labs got repeated, and we had a little hiccup... His kidney function was completely off. Nephrology got involved, and an ultrasound of his kidneys and more labs were ordered. An obstruction of Jacob's kidneys was a possibility. Would we be able to leave the hospital in time for my company dinner or would Jacob be admitted? In the end, Jacob's kidney function was fine. What it did tell Dr. E. is that Jacob most likely is retaining his urine. His kidney values were completely off when his bladder was not emptied properly. After a 5.5 hours long doctor's appointment, we left with antibiotics for the ear infection, and a protocol to measure all Jacob's urine and also catheterize him 2-3 times a day. I quickly changed, put on some make up, unpacked Jacob's stuff from the day, and drove off to the company dinner. It is sometimes hard to switch from Jacob's medical world to every day conversation. Despite possible kidney problems and catheterizing, it turned out to be a fabulous evening with great company, fantastic Italian food, and too much wine :-

The next day was a day full of meetings followed by dinner. I felt better, since we now had a plan for treating Jacob's ear infection and his bladder. It didn't take long before I got a text message from Joakim asking some questions around Jacob's antibiotics. I told him to call Dr. E. to clarify. The day went on with presentations, lunch, and team building. I could see that my voicemail was filling up with phone calls from Children's...In between activities, I quickly listened to the messages to see which messages I had to return since it was Friday afternoon. In between timing a team building exercise, I was able to schedule a sleep study, reschedule a GI appointment, and straighten out Jacob's antibiotics!

I had a great week, but I would lie if I would not say that it is a balancing act. I doubt many of my colleagues noticed much of my activity around Jacob except a few of them who know me really well, and always checks in on my little boy. At the end of the day, I have to say that I have come a long way balancing work and Jacob, and when I finally hit my pillow on Friday night, I felt fortunate to have both worlds. It keeps me balanced. It makes me happy.

 

 



And as I was busy at work, Jacob got to try out another talker! We're still trying to figure out which one will work best for our boy.

And look what my Spanish colleagues and friends got Jacob! A super hero shirt, so perfect!

And poor little ears of Jacob. He has not felt well all weekend, and today his other ear started to drain. He is now on two different antibiotics to kill this ear infection, and Jacob finally seemed to perk up a little bit tonight.

Love, Maria.

WHEN THE "NOT NORMAL" HAS BECOME NORMAL

I was taking Jacob down the stairs the other day. It was time to start preparing dinner. The stair lift is slow moving. You have time to kiss Jacob's kissable cheeks many times, and slow down for a moment. As I was putting Jacob in his wheel chair and putting on his neck collar, I had this flashback to Jacob's first hospital stay. I had this vivid memory of a nurse taking my baby away swaddled in a hospital blanket to get a blood draw. I remember learning that Jacob was a hard stick, something most parents will never know if their child is or not. I remember hearing Jacob screaming and crying through the hospital walls all the way from the procedure room. The room that I was never offered to go with Jacob. As I got my baby back, still swaddled in a hospital blanket, Jacob fell asleep on my arm from pure exhaustion of fear and pain. My inner self was screaming to take me away from this situation of seeing my baby boy hurting and being afraid.

There are so many "not normal" things in Jacob's life that has become "normal" after seven years on this journey. We have been doing blood draws once or twice a week for the last 5 months from our home. Jacob is still a really hard stick, to the point that he is having a medi-port for blood draws and IV medications. These days we don't need a procedure room, our own nurse hero Gemma is poking Jacob in our home as Shakira is singing from the IPad. Jacob doesn't blink or cry as the thick medi-port needle enters his skin. A blood draw today doesn't face our boy the slightest. And the same is true for me. Now my worry is around Jacob's medi-port possibly clotting, so when I see the dark blood starting to fill up the syringe, I know we're good. I know every color of tubing for blood draws, and what specific labs go into each tubing. Having a plastic bag with blood labs in my purse has become normal. I have even considered to put the blood draws in my little bike bag and getting a bike ride out of delivering Jacob's labs. Blood draws are normal.

Scooping out poop of a diaper for a stool sample is normal, eye balling a diaper to know if it is a 500 cc diaper is normal, gaging Jacob's skin color to know if he needs some extra oxygen is normal, listening to Jacob's obstructive breathing to determine if he is needing a new position or deep suctioning is normal, reading Jacob's comfort level based on his heart rate, skin color, and alertness is normal, monitoring and treating seizures are normal. And the list could go on and on.

In the middle of our normal, I am happy that I had no clue that this would become my normal that day in the hospital seven years ago. Normal happens over time, normal happens with experience, normal happens with patience, and normal happens to all of us. It might just look a little bit different to all of us, but we all have a normal.

Love, Maria.

MOST AWESOME IEP MEETING

I don't think I know a single special needs parent who enjoy an IEP (Individualized Education Plan) meeting. It becomes strikingly clear that your child needs extra attention, modifications, and is quite different than his or her peers. Many times you have a room full of school administrators who have never met your child, but apparently are qualified in knowing what is best for your child. Discussing individualized goals and have the school follow through on them is a separate topic. I have gotten pretty good at advocating for Jacob and putting emotions to the side, but an IEP meeting can push my hot buttons.

Two years ago, I experienced the worst IEP meeting. We had asked the school district to have Jacob continue at Bal Swan who had a proven track record of keeping Jacob medically safe. The school district was not interested in making an exception. It felt as if the meeting was only about money, and no importance was put to what Jacob needed to be successful at school. Our ARC representative said that she was "disgusted" as she left the meeting.

Jacob was hospitalized at this time with pneumonia. Dr. E. came by in the evening, and we talked about the IEP meeting. I was still fired up. As we talked, she got this concerned look on her face that means that she is going to say something that can not be disputed. She said that she unfortunately never could see Jacob attend a public school in his life. It would be too dangerous for Jacob's health. A public school could never keep Jacob medically safe. I still remember having a heavy heart that night as I had hot dogs and broccoli for dinner...

Fast forwarding to today. Jacob has been attending kindergarten at Bal Swan and Coyote Ridge this year. Coyote Ridge is a public elementary school five minutes from our house. I can't say that this year has been a great school year for Jacob when it comes to attendance. Jacob started having uncontrolled seizures end of September, which led to a long hospital stay later in the fall. When Jacob finally got home, he was on heavy steroids, and could not go back to school. Jacob has been homeschooled this year for the first time.

Despite poor attendance, we have been really impressed with the whole set up at Coyote Ridge for Jacob. We have for the first time started to think about Coyote Ridge as Jacob's elementary school for years to come. The team of his kindergarten teacher, special ed teacher, speech therapist and OT are all part of Team Jacob.

So, back to our most awesome IEP meeting. We met this week to talk about Jacob going back to school in May, and start planning for next school year. Since Jacob is going into 1st grade, we will say good-bye to Bal Swan since they only run through kindergarten. Bal Swan has been a place of home for us for the last five years, and I know that we will continue to have a connection to that school despite not being there every day. It has left a too big foot print to leave our lives and hearts.

The principal started out by saying that she had been thinking about Jacob a lot. Thinking about how we can make sure that Jacob can attend school as much as possible knowing that he can't attend school when he is sick or when kids are sick in his classroom. She was suggesting an individualized school year for Jacob. She wants to propose to the school district that Jacob's school year starts in April and runs thru October. So as all kids take the summer off, Jacob will be in full swing of his school year. She feels that this would give Jacob a much higher chance of actually going to school. He will be at Coyote Ridge during the regular school months, and attend summer school over the summer. We're very lucky that Jacob's kindergarten teacher is going to teach summer school this summer!

The other suggestion is to have Jacob's special ed teacher be his teacher all year around. She will be his teacher independently if Jacob is in school or at home. This is very exciting for us! There are times when Jacob has come home from the hospital, and there is no way that we can take him out of the house, but he could easily do school at home. Did I say that his special ed teacher is simply awesome? I am so excited about this change.

With Jacob having a consistent special ed teacher all year long, he will also be able to have his speech and occupational therapists all year around. As you're home schooled you don't receive therapies from school. By having his special ed teacher be the link back to Coyote Ridge, she will have a direct access to them all year around.

If you're not in the world of special needs, I am not sure that this seems as exciting as it actually is for Jacob. I know that everyone expects my son to be homeschooled all year around, but with the help and support of his school team, we can at least have Jacob in school with his peers for most of the year. Something that neither Dr. E. or myself would have thought was even possible two years ago.

And I have to mention Jacob's principal. She is my kind of woman. She is not one to follow rules. She is one to go to bat for her children. Two years ago when I fougt to keep Jacob at Bal Swan, and said no thank you to Coyote Ridge, she was one of few who supported me in the room. She had no problem stating that her school was not ready for Jacob, and that they (the school administrators) had to do the ethically right thing for my son. Two years down this journey with her, she is again proven herself. She is going to the top with our combined requests, and somehow I know she will get what we want. I have found a true partner in her and Jacob's school team. I was literally scared to put the word public school and Jacob in the same sentence two years ago, today I am  embracing it.

Love,
Maria.